Cochlear Implants, the Deaf Community & Neuroculture

A review of Parents of Deaf Children with Cochlear Implants: Disability, Medicalization and Neuroculture, by Laura K. Mauldin.

As cochlear implantation (CI) technology has emerged and increased in popularity over the past several decades, it has attracted significant criticism from the Deaf community, where many see it as a threat to their culture. In her dissertation, Mauldin takes an ethnographic approach to the issue, focusing on the parents of children receiving CIs and their interactions with clinical staff in an effort to understand both the structure and culture (or “neuroculture”) of cochlear implantation. CIs raise a multitude of issues relating to language use, disability, the role of technology in society, the purposes of medical intervention, and the politics of parenthood (especially motherhood). As such, Mauldin contributes to the body of work demonstrating the social and cultural construction of medical and scientific knowledge.

In the first two chapters, Mauldin describes the setting of her study and the methods employed. Her research centers on a CI clinic in the New York City area, as well as family homes and the classroom. She provides detailed descriptions of her activities at the clinic, where she spent several days each week over a five month period. She only had access to parents who had opted for the implants, not those still deciding or who had decided against them, noting that those parents make up a hidden population in clinic-based research. Mauldin also observes that almost all of the families in her study are white and middle/upper class, which statistics suggest is common for CI in general. In addition to participant observation, the author conducted interviews with 15 parents and 20 professionals. She uses grounded theory in her analysis, and identifies sociologists Howard Becker, Mitchell Duneier, and Jack Katz as major influences on her methodology. Mauldin relates her own history with the Deaf community, noting that her political sympathies towards the Deaf world made her somewhat uneasy in the clinic, and that this reflexivity is a part of her methodology.

Chapters 3 and 4 provide the background and theoretical context for this study. Chapter 3 outlines the history of sign language in the US and of the controversy surrounding cochlear implants. Mauldin describes the tension between the disability rights movement and the Deaf cultural movement, such as in their conflicting stances on segregated education. In Chapter 4, Mauldin argues that when studying disability as a social category, the materiality of the body must be recognized. Mauldin adopts Tom Shakespeare’s “critical realist” model, which rejects the idea that impairment is tragic, while still considering it to be relevant (Tom Shakespeare, Disability Rights and Wrongs. London: Routledge, 2006).

Chapters 5 through 8 follow the five-stage cochlear implantation process: identification, intervention, candidacy, surgery, and long-term follow-up care. Chapter 5 covers the first two stages, while candidacy and surgery are discussed in Chapter 6, and the last stage in Chapters 7 and 8.

In Chapter 5, Mauldin describes the “anticipatory structures” of the clinic: the people, practices, and protocols already in place and deployed to reduce resistance to medical intervention, as well as to maintain compliance. She describes the Newborn Hearing Screening program in New York State, and how the initial screening can be just the start of a series of hearing tests. Mauldin demonstrates that there is no one moment of decision regarding CIs; rather, it is a gradual shift over time in parents’ behaviours, as CI implantation surgery becomes the next logical step. The clinic links informational and emotional support, helping the parents to become ‘biocitizens.’

In Chapter 6, entitled “Accepting reality/cultivating compliance: class and candidacy,” Mauldin examines what makes a good CI candidate (e.g. perceived willingness to comply with the clinic’s instructions/procedures). Parents have high expectations of the CI, what she calls “extreme hope” (p. 142), and are anxious to be approved as candidates and move on to the surgery. Candidacy is determined not just by medical and audiological criteria, but by social criteria as well. Mauldin notes that middle class parents are more likely to adopt institutional recommendations at home. Furthermore, speaking a language other than English at home is viewed as a problem by clinic staff, who also see it as socially unacceptable to decide against receiving a CI. If parents are not compliant, they are viewed as being in denial. Therefore, middle-class native-born families are most likely to be viewed as good candidates and also to choose to implant.

Chapter 7 discusses what Mauldin calls “the neural project”, demonstrating how certain understandings of neurology map onto existing social relations (pp. 197-198). Mauldin begins by noting that there is a dearth of research on children and families following implantation. She describes the “mapping” process, in which the CI device’s settings are tailored to the child and their comfort level. Auditory training is a long-term process of forming the neural pathways for hearing. Mauldin describes the difficulties faced by families in trying to communicate when the child is not wearing the device (e.g., first thing in the morning). She criticizes the clinic’s instructions to avoid use of sign language, arguing that this runs counter to the scientific research on neuroplasticity and the ability of the brain to deal with multiple languages. She notes that not all parents follow the professionals’ instructions, as a few choose to use some sign language as a matter of practicality. Mauldin argues that the professionals’ instructions reflect normative values about language rather than actual limitations of the brain. She makes the point that arguments in favor of CIs are just as cultural as those against them.

Chapter 8 examines how the clinic merges with the classroom in deaf education. For example, the audiologist has an office in the school, and the clinic provides the recommendations for the set-up of speakers, microphones, and FM systems in the classroom. The spoken language and sign language program are kept separate. Mauldin observes that advocates of the spoken language option see sign language as a thing of the past – for them, spoken language is both the ‘real world’ and the future.

In the concluding chapter, Mauldin summarizes the main messages of her dissertation, including that medical practices do cultural work; that cochlear implantation is tied to parental anxieties over children’s futures; and that CI practices are linked to middle-class parenting styles. She demonstrates the relevance and usefulness of analysis of disability beyond the field of Disability Studies. The ethnography is presented as an example of “medicalized life” (p. 214), and as a look inside the medicalization process and the ambivalence inherent in it. Mauldin recommends that we should shift from critiques of CIs themselves to the practices surrounding them, knowing that CIs are here to stay. Disability Studies and Deaf Studies should use and critique the neurological discourse. She argues for a practical approach: “Injecting new notions of neuroplasticity, exposing science as a cultural enterprise, as well as engaging in rigorous scientific debate may be the most pragmatic way to affect the implementation of CIs” (p. 222). She again makes the case that we need longitudinal studies of CIs, and especially to hear from implantees themselves.

This dissertation makes an important contribution in complicating the discourse that constructs cochlear implants (CI) as an issue of the Deaf community (culture) versus hearing society (science). As usual, the real meat of the story, what we can learn the most from, is the gray area in the middle ground between the pro/con camps. In this way Mauldin clearly demonstrates Dirksen Bauman’s claim that sign language versus CI is a false dichotomy (Dirksen Bauman, “On the disconstruction of (sign) language in the western tradition: a Deaf reading of Plato’s Cratylus,” in Open Your Eyes: Deaf Studies Talking. Edited by D. Bauman. Minneapolis: University of Minnesota Press, 2008).

This study is also important in showing how people adapt based on their own needs (e.g., using signs when necessary to communicate, despite being instructed not to). Ethnography serves as a valuable tool to see beyond the official policies and statistics, to understand what is happening in the ‘real world’ when such technologies are deployed. Mauldin’s discussion of how the social model of disability marginalizes, if not ignores, the materiality of the body and how central the body really is to experiences of disability was particularly salient to me, as this is a topic I have written about previously (Heather T. Battles and Lenore Manderson, “The Ashley Treatment: Furthering the anthropology of/on disability,” Medical Anthropology, 2008, 27(3): pp. 219-226). In this way Mauldin’s work makes a contribution to further development of disability theory.

Mauldin’s work also contributes richly to many different fields, particularly disability studies, medical sociology/anthropology, and STS (science and technology studies). It is a timely investigation, as cochlear implants become increasingly prevalent. It also lays the groundwork for future studies of those who received these implants as children, as they grow up and relate their own experiences.

Primary Sources
Multi-sited ethnographic research in the New York City area; participant observation in a cochlear implant clinic, schools, and parents’ homes, as well as interviews with parents and professionals.

Dissertation Information
The City University of New York. 2013. 250pp. Primary advisor: Barbara Katz Rothman.